Presented during the NIH Collaboratory and PCORnet joint Grand Rounds webinar demonstrating the use of social media to educate and recruit members of the patient community into clinical trial volunteers.

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THE MICHAEL J. FOX
FOUNDATION FOR
PARKINSON’S
RESEARCH
Use of Social Media in Clinical
Research

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• Listening and Engagement
• Community Outreach
• Appendix
• Anatomy of Twitter
• Question and Answer
AGENDA

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Our Mission
To accelerate the development of improved therapies, and
ultimately a cure, for people living with Parkinson’s disease today.
Vital Stats
» Founded in 2000 by actor Michael J. Fox
» Public charity
» 58,000 donors in 2013
(individuals, corporations, nonprofits)
» No chapters: team of 90 based in NYC
» 1,500 grassroots fundraisers reaching
100,000 supporters worldwide in 2013
» $450 million in research funded to date
» $71 million in research grants funded in 2013
» 1,300 projects funded to date
» 450 active grants in current portfolio
» 30% of funded project are outside of the U.S.
» Fund academics, biotechs and pharma
THE MICHAEL J. FOX FOUNDATION IS
THE WORLD’S LARGEST NONPROFIT
FUNDER OF PARKINSON'S RESEARCH

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PROVIDE OPPORTUNITIES TO
PARTICIPATE IN RESEARCH
Parkinson’s Progression Markers Initiative
$60 million observational study to identify one or more biomarkers of PD progression
» Largest PD biomarker collaboration including MJFF and fifteen industry partners
» Original cohort enrollment complete (423 PD, 196 controls)
» Launched recruitment of 100-subject prodromal cohort in 2013
» Launched recruitment of genetics cohort studying alpha-synuclein and LRRK2 in 2014
Fox Trial Finder
Online clinical trials matching and patient engagement tool
» 27,000+ registered volunteers (75% PD, 25% controls)
» 300 actively recruiting trials at 700+ sites worldwide
» Available to volunteers and researchers worldwide and in five languages
» Active partnerships with leaders in PD research in Austria, Germany, France, Italy and Spain

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Scale outreach to the patient
community
• Educate on need for clinical trial
participants
• Demystify the volunteer experience
• Provide opportunities to participate in
research
• Encourage Fox Trial Finder
registration
• Promote trials through geotargeted
outreach
WHY MJFF USES SOCIAL MEDIA

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LISTENING AND
ENGAGEMENT

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LISTEN TO YOUR COMMUNITY
Identify where your community congregates on social media and listen to what they are saying.
Provide feedback and encouragement where appropriate. Be prepared for negative responses.

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Ask questions, share opportunities and be prepared to provide your community with a platform
to share their experience.
AMPLIFY COMMUNITY EXPERIENCE

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We encouraged this user to take pictures during her trial visit. This post was a result of that
request.
ASK YOUR VOLUNTEERS TO SHARE

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Originally shared on Instagram, we repurposed this photo with our Facebook audience.
REPURPOSE CONTENT

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EXPERIMENT: TRIAL AND ERROR
Not every social initiative we launch is successful. We introduced a hashtag, #TrialsFair, during
our NYC Trials Fair event and only the Foundation contributed tweets.

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COMMUNITY
OUTREACH

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Supporting www.foxtrialfinder.org
• To celebrate Michael J. Fox’s 51st birthday
on June 9, 2012, we asked our Facebook
fans to recruit 5 friends to sign up for Fox
Trial Finder, the Foundation’s clinical trial
online matching tool.
• The campaign ran for 3 days and was
supported by Facebook and Twitter
updates.
MICHAEL J. FOX’S BIRTHDAY

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Cross channel marketing
• Updates supporting the 3-day campaign
were viewed by 128,353 Facebook users
and received a total of 4,899 likes, 534
comments, and 712 shares.
• Facebook and Twitter directed over 1,800
visitors to Fox Trial Finder and led to 185
profiles created
• 65% of registrants had Parkinson’s
disease
MICHAEL J. FOX’S BIRTHDAY

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Best Practices
• Be social
• Use social concepts and contests,
like “Caption this:”
• Talk like your audience: No jargon
• Share updates on your progress and
thank your community
MICHAEL J. FOX’S BIRTHDAY

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Hosted December 2013 with Forbes
journalist Matthew Herper
• Featured representatives
from NINDS, Alzheimer’s Prevention Initiative,
the Institute for Neurological Disorders (IND),
and experts from The Michael J. Fox
Foundation Clinical Trial Strategy team.
• 93 individuals shared 626 tweets around the
subject of clinical trial recruitment and
generated 4,511,504 impressions.
• The chat trended in the United States. A trend
on Twitter refers to a hashtag-driven topic that
is immediately popular at a particular time.
TWITTER CHAT: #FOXCHAT

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Best practices
• Select a moderator who is not only
knowledgeable but has a large audience
• Prepare 8 – 10 questions in advance, give your
audience 2 – 4 minutes to respond to each
question or topic
• Prior to scheduling and promoting your chat,
identify influential community members and
make sure they can participate
• Promote your chat outside of Twitter, share on
your website and email lists
• Use the last 5 minutes of the chat for
participants to share materials and self promote
their work.
TWITTER CHAT: #FOXCHAT

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G-PPMI outreach to Jewish
Communities
• Networks we identified:
• Mommy bloggers
• Community centers
• Meetup.com groups
• ShulLists
• Best Practices
• Make it easy for folks to help
• Draft social copy
• Track their activity
• Use tracked links or forms
• Build a relationship
• Report back on progress and
impact
• Thank them for their help!
FIND BLOGGERS AND INFLUENCERS

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APPENDIX

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• Twitter is a real-time information network
that connects you to the latest stories,
ideas, opinions and news about what you
find interesting
• At the heart of Twitter are small bursts of
information called Tweets.
• Each Tweet is 140 characters long
WHAT IS TWITTER?

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ANATOMY OF TWITTER: DESKTOP
TIMELINE
News feed or timeline
Write a post
Write a post
Suggestions on
accounts to follow

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ANATOMY OF TWITTER: MOBILE
TIMELINE
News feed or timeline
Write a post

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ANATOMY OF TWITTER: A TWEET
User name and Twitter Handle
Time stamp and date posted
1-button to retweet a
message with comment
Favorite a tweet to demonstrate that
you like it, you think it is funny, you
agree with the sentiment or to
bookmark it for easy access

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ANATOMY OF TWITTER: HASHTAG
The # symbol, called a hashtag, is used to mark keywords
or topics in a Tweet. It was created organically by Twitter
users as a way to categorize messages.

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ANATOMY OF A TWEET: RETWEET
RT = Retweet.
The source of the original
tweet.
Link preview

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ANATOMY OF A TWEET: MODIFIED
RETWEET MT = Modified Tweet. The
original tweet has been
edited to fit 140 characters
and/or meaning.
The author’s initials. Used often on
accounts that are managed by a team.

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Only people who follow @MichaelJFoxOrg and @Overjoyed4life will see this tweet.
ANATOMY OF A TWEET: @REPLY

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When starting tweets with a @UserName, place a period before the name to ensure it displays
in your followers timeline.
ANATOMY OF A TWEET: .@MENTION

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• Twitter’s search function will highlight
relevant accounts and match based on
keywords
• Search [Keyword] and “Twitter” on Google
to quickly identify user accounts
ANATOMY OF TWITTER: SEARCH

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Follow Brian Fiske, VP of Research Operations at The Foundation: @bkfiske
• Choose a simple username
• Select a clear hi-res photo
• To include in your bio:
• Job title, @[Twitter handle of
employer]
• Interests (Bio, Chemistry, Running)
• Link to your LinkedIn profile or
professional bio
• You can include. But don’t feel obligated:
• Tweets do not reflect my employer
• RTs are not endorsements
GET STARTED: REGISTER

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You don’t have to tweet
For example, my dad, @SkiChas, uses Twitter as a news source. He doesn’t tweet, but he
follows accounts that offer relevant information, like the ski report.
• Follow relevant accounts:
• Media
• Patient communities
• Industry peers
• Regulatory organizations
• Thought leaders
• When you’re ready to start tweeting:
• Respond to comments with your
own opinion or ask questions
GET STARTED: FOLLOW ALONG